AVMs of the Cerebellum


AVMs of the Cerebellum

Self-explanatory. I would like to see more groups created in this fashion- organizing members by the locations of their malformations. Everything else seems to branch off from those..

Members: 62
Latest Activity: on Sunday

Discussion Forum

dizzy and swollen

Started by Howard. Last reply by Boston Celtics Jun 17. 10 Replies

Hi, Howard here. I am now just about 6 months out from surgery. AVM repaired and Aneurism clipped. Both in my cerebellum. Still quite sick. Very dizzy most of the time which often leads to nausea and…Continue

New Kid on the Block

Started by Rommit2001. Last reply by dancermom Jun 4. 1 Reply

Hi Everyone,I just found this group and hope to see some interesting topics. I had my AVM rupture on 10/19/2013. The one physical issue I continue to batt;e is Ataxia. Through exercise and just daily…Continue

Getting Groceries

Started by multistats. Last reply by multistats May 22. 9 Replies

When I was in the grocery store earlier today, I remembered the problems grocery stores provided. This problem was true of stores in general, but was particularly true of grocery stores. Those of us…Continue

Tags: grocery, stores, up, throwing, dizziness

AVM post surgery

Started by Rallie. Last reply by Howard May 4. 5 Replies

HELLO EVERYBODY,I'm new around here.Hope my post gets posted.Wait and see. I saw that somebody mentioned Acupuncture!Does anybody have any experience with that?Or Canabisoil? I had my AVM removed on…Continue

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Comment by Julie on May 20, 2014 at 11:50am
BTW -thank you!
Comment by Julie on May 20, 2014 at 11:49am
Hi Lulu, I'm AVM-free as of 2008-2009. I can't say that I miss it:)

Things will get better. Sometimes it takes some time; stay focused on the positives, though. It helps a bunch.
Comment by Lulu on May 20, 2014 at 3:10am

Thanks for sharing Julie. You sound very brave. Best wishes for your continued recovery. Do you still have your AVM?

Comment by Julie on May 19, 2014 at 10:31pm
I had a rupture and then in a coma for a few weeks.

It was quite a change: one minute, I was doing MarCom stuff and teaching ballroom dancing; the next I was struggling to press the nurse's button in a hospital bed. Very bizarre, to say the least.

I saw most of my progress in the first year; everyone's different, but I think that much is a pretty standard goal to work especially hard during that crucial time.
Comment by Lulu on May 19, 2014 at 8:34am

Thanks Julie. Did you have treatment or did your AVM rupture?

Comment by Julie on May 19, 2014 at 7:02am
Hi - I did initially improve big time (from being completely paralyzed except for my eyes to functioning without machines and able to do many things); however, I've seen me go in waves, kind of like a roller coaster ride, where I have ups-and-downs even with my somewhat stable strengths.

I've found that developing my authentic patience is the best thing for me - I know that the parts where it takes longer than usual, means that I might need to do that particular function in a different way; and, in the meantime of what may or may not be temporary, to work on my patience, deep breathe/focused breathing, and laughing at things and myself/broaden my sense of humor.

Comment by dancermom on April 30, 2014 at 3:51pm

Nice to hear from you, Boston. Good luck on finals!

Comment by Boston Celtics on April 30, 2014 at 3:45pm

I've been busy/lazy because of school over the past however many weeks. I am going to read everything when finals are over on the 13th. :)

Comment by Silvia on March 7, 2014 at 11:21pm

Update on my son Roy
He is still at Children's hospital in Oakland, he is due to be discharged, still breathing with a vent. They stopped weaning him off he vent. He doesn't move much when we ask him to, but his OT therapist said she got him to open his left hand. His spasticity is better with the help of some splints on for two hours off for 1 hour. His vomiting is not as bad anymore, he is on a 20 hour continuous feeds. He is not being accepted for rehab, im looking for a place that will give him Hyperbaric therapy. So far all places need him to be weaned off the vent. Im feeling lost and helpless for my son. I keep trying to find him help, but so far still looking. His kidney stones are still there and the doctors say it is not causing him discomfort? Im very sad today because it has been 6 months and my son has not seen the sunlight or breathed fresh air. I miss my son so much. He does turn his head and turns away when he doesn't want oral care done or suctioning. He bites down, he moves his body when being turned and sometimes lift his upper body and head. He cant speak, but yesterday they tried the speaking valve with the speech therapist and I was told he tolerated it well. Still waiting for my son to have a recovery 6 months now.

Comment by Ann Ning Learning How on March 7, 2014 at 3:53pm

Hi, Mollybaby - That's a HUGE deal that you're seeing your husband try to modify his behavior and be successful! I describe myself as "saltier than I used to let on" - so I've always been like this, I just lack the social filtering skills to control it like I used to. Thankfully it doesn't get me into too much trouble. I like to say I'm more fun to be around now. But it's a very hopeful thing to hear about someone who knows about certain issues and can exert himself enough to keep things under wraps. Yay him! I'm going to file that info away for future reference :)


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Blog Posts

looks like avm free

Posted by Martin Brooks on July 13, 2014 at 6:46am 7 Comments

So 10 hours surgery on Monday to cut out my avm and I woke with no movement or eye sight problem which is great !!!!!!!!, I did need a "drain" fitted which I think was due to bleeding. Surgery was estimated at 3 to 4 hours and turned out was 10 !…



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